Hi. The last week has been very dark for me. Remember when I talked about the black hole I was so afraid I would fall into after losing Alex? Well, I fell into it. I also started taking some new supplements and medication (to help me sleep) and after reviewing the side effects have called my doctor to let them know. I will go in this morning so perhaps this too shall pass.
The darkness felt alot like hormones but once that was ruled out and the mood continued I started to think. Have you ever not felt in control of your mood? I really did feel like something had hold of me and it would not let me "snap out of it." I have been a royal B-I-T-C-H!! I have been short and loud with Zoe and that is just NOT me!! Poor Steve and Nonni, they are just trying to get out of my way and have had to walk on eggshells around me. I keep telling them I hate this as much as you do but in 10 minutes I'm that crying, short tempered, ball of mush on the floor again. So wish me luck at the doctor's office. I REALLY need it!
God bless, hugs,
G
Monday, January 28, 2008
Tuesday, January 22, 2008
Tuesday, January 22, 2008 - 7 weeks today
Hi. Life has been very difficult lately. The shock of Alex's passing is wearing off and the reality is setting in. I can cry at any given moment. Friends say "it's been seven weeks, that's nothing". Well it is something to me. It's an endless, gut-wrenching, abyss of despair that is my life without my beautiful boy. I miss him so much. I often think how easy it would be to end the pain and just be with him. (That is normal by the way.) But I know Alex would be very disappointed in me if I did that. I know he was my son for a grand, beautiful, joyous reason and I just have to push through this utter despair to get back to that place. It is just so very hard to do it without him, without his smile, without his laugh and his jokes, without his love. I thrived on that love! I was the best I could be with Alex for the first time in my life. I really just wanted to get it right for him. He forced me to change so many things that were negative in my life. He truly was a gift (and still is).
I find it hard to have more than one task on my plate per day anymore. I try to get multiple errands done but then complete exhaustion takes hold and I can't wait to get home. I have little desire to be social and the past week of cloudy, gloomy days made me feel quite comfortable. The sunshine only makes me feel like I should be doing "sunny day" things that I just don't have the energy to do. Zoe begs to go outside when she comes home from school and it is just beyond me at this time. I went to interview a counselor today and I really liked her. One of her recommendations was to get outside for a brisk walk for 10 minutes every day. I could not make myself tell her how improbable that was at this point. She also had me do three minutes of meditation on "just this moment". Her goal is to get me to "be in the moment" and be mindful of life. I told her Alex taught me how to do that but that lesson is fading as the depression creeps into my mind.
So, do you remember that my MAC crashed the day before Alex's memorial service? We found out yesterday that the data was not going to be easily recovered and today the estimate came in at $1,500 plus parts. I was devastated last night. I told Steve that I don't have Alex and now I don't even have the pictures I took of Alex over his life span. I know we will come up with this money and it will be worth it. It just seems like we can't catch a break.
To make things worse, Steve's cat, Sage passed away and was found today. Steve has had that cat for twenty years and I really thought this was going to send him over the edge. He said at dinner that if the last few weeks had not been what they were; then he probably would have taken the news harder than he is. In comparison to his son's death, Sage's passing is a piece of cake especially since they shared so many important life moments together. So the question of the day is, "WHEN WILL WE CATCH A BREAK?"
I know better than anyone that it can ALWAYS be worse and to be grateful for the blessings in life. It's just been a very long stretch of bad times for this family. Saturday was the one year anniversary of Steve's father's passing. So perhaps you can see why life has been so hard lately.
Well, now that I have brought you all down, I'm going to bed. Tomorrow is a new day and maybe just maybe getting this out of me and into the universe will offer some release to my pain and I will feel like being in the sun tomorrow.
God bless!
G
I find it hard to have more than one task on my plate per day anymore. I try to get multiple errands done but then complete exhaustion takes hold and I can't wait to get home. I have little desire to be social and the past week of cloudy, gloomy days made me feel quite comfortable. The sunshine only makes me feel like I should be doing "sunny day" things that I just don't have the energy to do. Zoe begs to go outside when she comes home from school and it is just beyond me at this time. I went to interview a counselor today and I really liked her. One of her recommendations was to get outside for a brisk walk for 10 minutes every day. I could not make myself tell her how improbable that was at this point. She also had me do three minutes of meditation on "just this moment". Her goal is to get me to "be in the moment" and be mindful of life. I told her Alex taught me how to do that but that lesson is fading as the depression creeps into my mind.
So, do you remember that my MAC crashed the day before Alex's memorial service? We found out yesterday that the data was not going to be easily recovered and today the estimate came in at $1,500 plus parts. I was devastated last night. I told Steve that I don't have Alex and now I don't even have the pictures I took of Alex over his life span. I know we will come up with this money and it will be worth it. It just seems like we can't catch a break.
To make things worse, Steve's cat, Sage passed away and was found today. Steve has had that cat for twenty years and I really thought this was going to send him over the edge. He said at dinner that if the last few weeks had not been what they were; then he probably would have taken the news harder than he is. In comparison to his son's death, Sage's passing is a piece of cake especially since they shared so many important life moments together. So the question of the day is, "WHEN WILL WE CATCH A BREAK?"
I know better than anyone that it can ALWAYS be worse and to be grateful for the blessings in life. It's just been a very long stretch of bad times for this family. Saturday was the one year anniversary of Steve's father's passing. So perhaps you can see why life has been so hard lately.
Well, now that I have brought you all down, I'm going to bed. Tomorrow is a new day and maybe just maybe getting this out of me and into the universe will offer some release to my pain and I will feel like being in the sun tomorrow.
God bless!
G
Thursday, January 17, 2008
Thursday, January 17, 2008 - Gratitude
Good morning,
I want to thank all of you who have expressed such kindness and warmth in your comments to this blog. It is absolutely amazing and really does make me think. I wrote the first paragraph of a draft of my life's story. Then I started rambling and then the doubt set in about whether any one would be interested in such a story. I hope to just get it out then let someone else make that determination. I also want to write about Alex's story and I have a few other ideas for some books I always thought I'd like to write (and read). Wish me luck, courage, clarity and conviction!!
Zoe goes to see Alex's play therapist today for the first time. I am looking forward to her having an outlet for her emotions other than growling at people. She especially likes to growl at Nonnie. I don't know if I should discipline her on this or realize that Nonnie is a safe person for her to growl at (express herself) without repercussion. We'll see!
The 1st part of this week was horrible for me. Steve and I went back on our Slim 4 Life program and had to do this "restart" on Monday and Tuesday that set me off into a piss poor mood! I'm not drinking alcohol and now that I have gone 3 days without it, it's okay but believe you me I wanted some damn wine!!! I lost 8 pounds those first 2 days and Steve lost 4 (he did not wear good "weighing in" clothes, in my opinion). So hopefully the weight will continue to come off.
My first therapist interview is next week. I really don't look forward to this but know it is a necessary evil. I'm soooo much better at stuffing feelings (and myself) than working on all of my baggage.
Okay, I really just wanted to thank everyone for everything. You can't imagine the incredible gestures of support that we get daily. It is so wonderful. This is a good world and there are very nice people in it! Thank you all for reminding me of that!
I have lunch and coffee appointments with some of Dr. Foreman's staff in the next week. I really do want to find a way to put them on a beach with absolutely nothing to do!! Wish me luck!
Okay, gotta get! God bless and hugs!
G
I want to thank all of you who have expressed such kindness and warmth in your comments to this blog. It is absolutely amazing and really does make me think. I wrote the first paragraph of a draft of my life's story. Then I started rambling and then the doubt set in about whether any one would be interested in such a story. I hope to just get it out then let someone else make that determination. I also want to write about Alex's story and I have a few other ideas for some books I always thought I'd like to write (and read). Wish me luck, courage, clarity and conviction!!
Zoe goes to see Alex's play therapist today for the first time. I am looking forward to her having an outlet for her emotions other than growling at people. She especially likes to growl at Nonnie. I don't know if I should discipline her on this or realize that Nonnie is a safe person for her to growl at (express herself) without repercussion. We'll see!
The 1st part of this week was horrible for me. Steve and I went back on our Slim 4 Life program and had to do this "restart" on Monday and Tuesday that set me off into a piss poor mood! I'm not drinking alcohol and now that I have gone 3 days without it, it's okay but believe you me I wanted some damn wine!!! I lost 8 pounds those first 2 days and Steve lost 4 (he did not wear good "weighing in" clothes, in my opinion). So hopefully the weight will continue to come off.
My first therapist interview is next week. I really don't look forward to this but know it is a necessary evil. I'm soooo much better at stuffing feelings (and myself) than working on all of my baggage.
Okay, I really just wanted to thank everyone for everything. You can't imagine the incredible gestures of support that we get daily. It is so wonderful. This is a good world and there are very nice people in it! Thank you all for reminding me of that!
I have lunch and coffee appointments with some of Dr. Foreman's staff in the next week. I really do want to find a way to put them on a beach with absolutely nothing to do!! Wish me luck!
Okay, gotta get! God bless and hugs!
G
Monday, January 14, 2008
Monday, January 14th, 2008 - Shock Fading . . .
Good Morning. The past few days have been very difficult ones for me. I believe that the shock of Alex's passing is fading and the sadness is setting in. For some reason, Friday was a horrible day for me. I spent the morning at the computer, attempting to get some order back in our lives and by 11:30am was utterly exhausted. After picking up ZG, I went to sleep and rested for quite a while. The tears come at the drop of a hat. There is no known trigger except my own thoughts. I am having a hard time fathoming living the rest of my days without him in my life. AS I said before, being a mom and being Alex's mom, is the best thing I have EVER done in my life. It brought me so much happiness and joy not to mention pride. I was one of THOSE women who loved being pregnant because I knew motherhood was going to be grand (and I never had morning sickness)! How do you go on without your joy, your happiness, your pride, your heart? I just don't know. I know Zoe brings me great joy and luckily for me her strong will does not allow me time to wallow. When she wants attention, she gets ATTENTION!!! If you have ever met ZG (or any two year old girl with a mind of her own) then you know what I mean. I love her so much. Bedtimes have been difficult the last few days. My brother-in-law was in town on business, and ZG was sleeping in our bed. We have a collage of Alex and Zoe pictures, portraits and drawings on our wall (it was the one at the memorial service). Saturday night after looking at this collage for a while, Zoe wanted to sleep on the floor (the only time ZG slept on the floor in our room was when Alex was very sick and my sister's family was in the nursery) and was very sad because she wanted "her Alex back". I echoed her sentiment and we had a soft cry together. Yesterday she talked about Alex quite a bit too and all I can do is empathize with her. Steve is also going through this new "realization process" and therefore has been emotionally exhausted after working all day. This past week we had very little communication except about "household minutia". I found out through the week that he was planning a guys' night out (normally fine) via a third party; then he started doing other little things that made me feel very lonely and unwanted. Finally by Saturday night, I was fed up and had to leave the house. I left my mobile phone and headed to the bookstore. There I purchased a journal and pen and started writing a letter to Steve. I then just wandered around the bookstore browsing and thinking and not thinking. It was really great and quite cathartic. I never knew how popular bookstores are on Saturday nights. I am pretty sure I will do that again. It was fun and I had a gift certificate so it was cheap too!! Anyway, my demeanor Saturday night and Sunday morning revealed that I was still irked and Steve wanted to talk about it. I told him about the letter and he asked to read it on his way home from the airport (to drop off Blake.) It took him several hours to return and we had a very good, poignant, honest talk when he did. Nothing is resolved yet but a plan has been put into place. So wish us luck. You see it is just too hard to be there for someone else, focus on work or child rearing and be emotionally available to a grieving spouse all in one day or as we found out in one week. This is not going to be an easy road for our marriage, but Steve and I do love each other and are at least quite willing to do everything possible to make it a marriage we both want. So last night I had this dream, at the very end of it was a woman running around like a mad person. She was caring an extraordinary large piece of luggage with stuff hanging out of all sides. I was taking care of Zoe in the dream when this woman was running around us, but a therapist once told me that some dream theorists propose that we are every person/thing in our dreams. So what does this tell you? I'm carrying around a lot of emotional baggage and feel out of control? Nail on head!!! The image in my mind is pretty comical so I have to laugh at myself and wanted to share this with you all. Well, today is the eight year anniversary of my and Steve's first communication. You see we met on match.com. I was in the first day of my free trial and he had been a member for a few months. My login was Buttercup and his was Montague. I told him about my love for Colorado (was in OKC at time) and he invited me to come play in the mountains with him! At this time I believed fairy tales and "falling in love at first sight" were rude fantasies to put in little girls' minds but after meeting Steve and spending just a few days with him; I had to shut up on that opinion! By April, I was driving to Colorado with a carload of belongings and one year later, Steve proposed (on this day) and in August we were married. We bought our home in December and Alex was born the following October. Good story huh? Since that time, we have met several couples that met over the Internet. It seems to be the way of the future! So far today is starting off okay. Wish me luck for the rest of the week. I have appointments set to start interviewing therapists next week. Love, hugs and God bless! G
Tuesday, January 08, 2008
Tuesday, January 8th - 5 weeks without Alex
Today at 11:45am will mark the five weeks without Alexander in our lives, physically. I really don't know what to say about that except we still count the days and miss our precious boy so very much. Physically I am ill with "the crud" that is going around town. Mentally, I am a wreck too. I absolutely can't sleep. I went 22 hours without rest (and tried) last Friday night. Even NyQuil did not help me out two nights ago. My heart races for absolutely no reason and my mind fights the deep depression that is lurking in its corners. Feeling ill does not help this battle, I must say.
Zoe Grace is having a difficult time readjusting to her school schedule. She is like me in that she is a night owl by nature and yesterday's wake up call really threw her body into shock! She came home and slept from 6p til 7a with an hour awake during the night. During that hour she changed her pj's and pull up and talked and talked to her daddy. I was trying desperately to stay asleep.
I'm still working on the goals (not resolutions) I set for 2008. If I could only figure out what I want to "do" for the rest of my life, I know some peace would come to my mind. Does anyone know a good "career coach"? I know I want to wake up and look forward to the day and bookkeeping NEVER did that for me. I love and miss my former employer but have yet to make contact with them to explore any possibilities of my return. Steve says it is "too easy" and is encouraging me to find my "place". I don't know if he is right or wrong but I do know I don't want to fall into old patterns and lose the "moment" that Alex taught me about every day.
Okay, I better get. I feel like S&*T! The docs were booked yesterday morning by 8:35am so Linda and I will go in this morning. I need to feel better and to sleep. I also need to get this fire hazard of a Christmas tree out of my life! My sister slipped on some sunken ice on a bridge in Breck last Monday (her 10th wedding anniversary) and broke her arm at the shoulder. She was (and is) in a great deal of pain so ZG and I went to the mountains to help her out last Thursday and Friday. Then I came home sick, so my tree is still up. Gees Louise!
I hope your day is a good one, if it is not; then make it a good one (for me, please)!
Love and God bless!
G
Zoe Grace is having a difficult time readjusting to her school schedule. She is like me in that she is a night owl by nature and yesterday's wake up call really threw her body into shock! She came home and slept from 6p til 7a with an hour awake during the night. During that hour she changed her pj's and pull up and talked and talked to her daddy. I was trying desperately to stay asleep.
I'm still working on the goals (not resolutions) I set for 2008. If I could only figure out what I want to "do" for the rest of my life, I know some peace would come to my mind. Does anyone know a good "career coach"? I know I want to wake up and look forward to the day and bookkeeping NEVER did that for me. I love and miss my former employer but have yet to make contact with them to explore any possibilities of my return. Steve says it is "too easy" and is encouraging me to find my "place". I don't know if he is right or wrong but I do know I don't want to fall into old patterns and lose the "moment" that Alex taught me about every day.
Okay, I better get. I feel like S&*T! The docs were booked yesterday morning by 8:35am so Linda and I will go in this morning. I need to feel better and to sleep. I also need to get this fire hazard of a Christmas tree out of my life! My sister slipped on some sunken ice on a bridge in Breck last Monday (her 10th wedding anniversary) and broke her arm at the shoulder. She was (and is) in a great deal of pain so ZG and I went to the mountains to help her out last Thursday and Friday. Then I came home sick, so my tree is still up. Gees Louise!
I hope your day is a good one, if it is not; then make it a good one (for me, please)!
Love and God bless!
G
Tuesday, January 01, 2008
Tuesday, January 1st 2008 - New Year
Good morning. Well here we are in 2008. 2007 was quite a year. Steve is ready to slam the door and seal it shut and throw away the key. Personally, I don't feel the same way. 2007 taught me a great deal and changed me forever. I know I have to embrace this past year, learn from it and grow to be the person my soul so longs for me to be. I woke up thinking about all of this and here are some goals I have come up with so far. Please note they are not in any particular order.
- be kind and gentle to myself and others
- take a moment and be sure that I reflect and respond to the "intent" in mine and others' words and actions
- be mindful of my body's needs i.e. - good nutrition, exercise, sleep, work, play, sex, meditation and "me time"
- be generous with the love and joy Alex so easily expressed to the world (since I'm not Alex this may be a hard one, but I'll give it a shot)
- finally get IT; that we are all only perfectly imperfect and mistakes are golden learning opportunities and a necessity of life
- recognize and reject invitations to the old, destructive ways of being, thinking and living
-get in touch with God, my inner self, my purpose and my mission
-work to put Dr. Foreman and his team on a beach twiddling their thumbs because they have nothing to do!!!!!!!
-find joy in every day, laugh, laugh and then laugh some more
-build new friendships and keep existing friends close and in my life with kindness, time and generosity
-teach Zoe about the world and learn from Zoe about the world
-work with Steve to build a marriage we both need and desire
-walk my dog daily!!!
-continue to learn from Alex about love, life and purposeful living!
-let my house get messy with dishes in the sink and everything and LOVE the free time I have because I'm not cleaning it!!!
-stop using retail therapy as a coping mechanism and start be responsible about money and savings.
-get rid of stuff we don't use or need
-get this house radon tested!!!!
-Read more!
-Listen more!
-get thank you cards out to everyone that has been so generous to our family in the last 18 months!
-get into therapy that works! (or not, if I'm successful at all of the above, then I may just cure myself!!)
-Smile more!
-Get and give more hugs!!
-Be kind and gentle with myself and others (I know this is a repeat, but it is very important)!!!
I think I could go on forever with this list but let's be realistic shall we? So everyone wants to know how ZG is doing. She has not lost her spirit and spunk. She does exhibit some real anger at times and will even pinch herself if she gets very frustrated. One day she came in and said to me "Mommy, where's Alex, I lost him?" over and over. When we were leaving OKC and buying snacks for the plane, Zoe found gummy bears and wanted to buy them for Alex. All I can do when things like this happen is say, "Alex is dead." We still talk about him alot and I hope that never changes. Overall she is thriving in her new found attention and quality time with Steve and me.
Steve has been sick since we got back on Friday. I started feeling kinda puny yesterday with a sore throat and stuff but not as run down as he seems to feel. The Xmas holiday was quite hard without our precious boy there to help celebrate. Alex got me a beautiful charm bracelet with four lockets (two tear drops and two hearts) and a flying bird. I wear it everyday along with the "beads of life" necklace from TCH. Alex got his cousin, Evan, a skull cap with a glow in the dark design on it. I can't remember if the design is spider man or a skull and cross bones. I still don't know what he got his "girlfriend" Katharine, but I'm sure I'll find out soon.
Being home has been VERY difficult. Alex is in every particle of this house. Last night as Steve was looking for a lost shoe, he found some of Alex's toys and his water bottle under our bed. That kind of stuff is hard to take. It just reminds you of the hours upon hours we played this particular game with Alex and how many times we filled that water bottle and it sustained him through the night.
My heart still aches for Alex. I don't spend my days crying all the time but I do have crying episodes every day. Like right now.
Okay, live and learn and never give up! Or "Keep moving forward" as they say in "Meet the Robinsons" movie.
God bless and big hugs!
Love, G
- be kind and gentle to myself and others
- take a moment and be sure that I reflect and respond to the "intent" in mine and others' words and actions
- be mindful of my body's needs i.e. - good nutrition, exercise, sleep, work, play, sex, meditation and "me time"
- be generous with the love and joy Alex so easily expressed to the world (since I'm not Alex this may be a hard one, but I'll give it a shot)
- finally get IT; that we are all only perfectly imperfect and mistakes are golden learning opportunities and a necessity of life
- recognize and reject invitations to the old, destructive ways of being, thinking and living
-get in touch with God, my inner self, my purpose and my mission
-work to put Dr. Foreman and his team on a beach twiddling their thumbs because they have nothing to do!!!!!!!
-find joy in every day, laugh, laugh and then laugh some more
-build new friendships and keep existing friends close and in my life with kindness, time and generosity
-teach Zoe about the world and learn from Zoe about the world
-work with Steve to build a marriage we both need and desire
-walk my dog daily!!!
-continue to learn from Alex about love, life and purposeful living!
-let my house get messy with dishes in the sink and everything and LOVE the free time I have because I'm not cleaning it!!!
-stop using retail therapy as a coping mechanism and start be responsible about money and savings.
-get rid of stuff we don't use or need
-get this house radon tested!!!!
-Read more!
-Listen more!
-get thank you cards out to everyone that has been so generous to our family in the last 18 months!
-get into therapy that works! (or not, if I'm successful at all of the above, then I may just cure myself!!)
-Smile more!
-Get and give more hugs!!
-Be kind and gentle with myself and others (I know this is a repeat, but it is very important)!!!
I think I could go on forever with this list but let's be realistic shall we? So everyone wants to know how ZG is doing. She has not lost her spirit and spunk. She does exhibit some real anger at times and will even pinch herself if she gets very frustrated. One day she came in and said to me "Mommy, where's Alex, I lost him?" over and over. When we were leaving OKC and buying snacks for the plane, Zoe found gummy bears and wanted to buy them for Alex. All I can do when things like this happen is say, "Alex is dead." We still talk about him alot and I hope that never changes. Overall she is thriving in her new found attention and quality time with Steve and me.
Steve has been sick since we got back on Friday. I started feeling kinda puny yesterday with a sore throat and stuff but not as run down as he seems to feel. The Xmas holiday was quite hard without our precious boy there to help celebrate. Alex got me a beautiful charm bracelet with four lockets (two tear drops and two hearts) and a flying bird. I wear it everyday along with the "beads of life" necklace from TCH. Alex got his cousin, Evan, a skull cap with a glow in the dark design on it. I can't remember if the design is spider man or a skull and cross bones. I still don't know what he got his "girlfriend" Katharine, but I'm sure I'll find out soon.
Being home has been VERY difficult. Alex is in every particle of this house. Last night as Steve was looking for a lost shoe, he found some of Alex's toys and his water bottle under our bed. That kind of stuff is hard to take. It just reminds you of the hours upon hours we played this particular game with Alex and how many times we filled that water bottle and it sustained him through the night.
My heart still aches for Alex. I don't spend my days crying all the time but I do have crying episodes every day. Like right now.
Okay, live and learn and never give up! Or "Keep moving forward" as they say in "Meet the Robinsons" movie.
God bless and big hugs!
Love, G
Friday, December 21, 2007
Friday, December 21st - Getting Harder
So we have moments of "normalcy"; moments of confusion; moments of distress; and moments of woe and despair. I look at the Alex and Zoe's last Christmas picture taken November 2006 in which they are standing, holding hands and smiling for the camera. That seems so long ago and far away but also just like yesterday. Oh how I long for Alex to be a part of our holiday. It's just too hard to do this without him.
There is no refuge either. I can't go out. I can't stay in. Yesterday his fingerprints on the backseat car window made me weep for him. I want to hear his sweet voice. I want to make him oodles and oodles of noodles in a river of sauce with a mountain of cheese on top. I want to hold my baby boy. I want to see his beautiful face and tell him how much I love and cherish him.
Tonight we will have our "Christmas" here. Zoe is getting an "Alexander Girlz" brand baby doll with brown hair, brown eyes (just like her). Nonni got her a doll set including a baby rocker, high chair and stroller. I also got her a sock monkey, but I can't find it. I can't tell you what I got Steve since he reads the blog. But it is something he has asked for and will enjoy, I'm sure.
This week has been very difficult. I'm afraid it is not going to get any easier either. I'm glad we are leaving town but also dreading it. I just hope I don't ruin Christmas for all of my dear family and friends. I try so hard to remember Alex's lessons. To enjoy every moment and to be present in the moment. To love and smile. To play no matter how difficult it might be to do so. To listen to music that you love and dance whenever you can. To give and get big hugs. To say "I love you" to everyone you care for every time you see or talk to them. To enjoy the sun and the moon and rainbows. To ask for help when you need it and never do anything you really don't want to do. To eat what you love when you want it, but not to be gluttonous about anything. To honor the day and be grateful for everything in your life, even the bad stuff that makes life worth living!
I think I could go on forever, but I'm feeling better now, so I will stop. Happy Holidays to you all. I love you.
God bless.
G
There is no refuge either. I can't go out. I can't stay in. Yesterday his fingerprints on the backseat car window made me weep for him. I want to hear his sweet voice. I want to make him oodles and oodles of noodles in a river of sauce with a mountain of cheese on top. I want to hold my baby boy. I want to see his beautiful face and tell him how much I love and cherish him.
Tonight we will have our "Christmas" here. Zoe is getting an "Alexander Girlz" brand baby doll with brown hair, brown eyes (just like her). Nonni got her a doll set including a baby rocker, high chair and stroller. I also got her a sock monkey, but I can't find it. I can't tell you what I got Steve since he reads the blog. But it is something he has asked for and will enjoy, I'm sure.
This week has been very difficult. I'm afraid it is not going to get any easier either. I'm glad we are leaving town but also dreading it. I just hope I don't ruin Christmas for all of my dear family and friends. I try so hard to remember Alex's lessons. To enjoy every moment and to be present in the moment. To love and smile. To play no matter how difficult it might be to do so. To listen to music that you love and dance whenever you can. To give and get big hugs. To say "I love you" to everyone you care for every time you see or talk to them. To enjoy the sun and the moon and rainbows. To ask for help when you need it and never do anything you really don't want to do. To eat what you love when you want it, but not to be gluttonous about anything. To honor the day and be grateful for everything in your life, even the bad stuff that makes life worth living!
I think I could go on forever, but I'm feeling better now, so I will stop. Happy Holidays to you all. I love you.
God bless.
G
Wednesday, December 19, 2007
Wednesday, December 19th - Good Morning After All
Collective Soul has been one of my favorite bands for a very long time. As I was listening to their new album "Afterwords" I felt as it was written for us. The song below says how I feel many days and I wanted to share it with you. I highly recommend the album as well!
"Good Morning After All"
Yeah you give up some days
When the tears they must flow
But God is always your strength
The only strength that you know
Now everything starts to fall in place
As you wake just to crawl
Still you say good morning after all
Yeah you stand just to fall
Still you say good morning after all
Yeah you questioned this life
Sure you wondered about love
But you swear there's always hope
Always hope from above
Now everything starts to fall into place
[chorus]
It's just another breath
It's just another breath you say
It's just another step
It's just another step today
"Good Morning After All"
Yeah you give up some days
When the tears they must flow
But God is always your strength
The only strength that you know
Now everything starts to fall in place
As you wake just to crawl
Still you say good morning after all
Yeah you stand just to fall
Still you say good morning after all
Yeah you questioned this life
Sure you wondered about love
But you swear there's always hope
Always hope from above
Now everything starts to fall into place
[chorus]
It's just another breath
It's just another breath you say
It's just another step
It's just another step today
Monday, December 17, 2007
Monday, December 17th - This is Too Hard
Thank you all for your prayers and kind words. I love to read how Alex's life has made the world a better place. I too do not know where the energy comes to face each day. I have to force myself out of bed in the morning and into bed at night since sleep is not coming easily to me. Alex's presence is all over the house. I think he is playing with us in his very special ways. I miss him so much. And now I am crying.
Last week on the ABC Nightly News program, Joe Biden was being interviewed. He lost his wife and daughter in a car accident early in his life. His 2 boys survived and he talked about loss. To paraphrase his words he said "suicide is a rational option, if the love you shared was as great and profound as you believe then why would you want to re-establish your life?" (to hear the interview in its entirety go to www.abcnews.com and search "joe biden"). I have to say that living without Alex is too hard at times but I don't want to check out. I just want Alex with us again and always. I miss his smile and his laugh and his big brain! I want to hold him and stare into those beautiful eyes; watch him sleep and play a game with him. My heart has never known unconditional love before Alex and Zoe. Alex was the first to show me how grand love really can be. I knew when I met him that my life would never be the same again.
Mr. Biden also talks about feeling guilty when you realize that you want to live. He talks about his father telling him "get up, get up". His father told him that success is not measured on how many times you are knocked down but how quickly you get up. He also says you have to focus on what you have. I know this is an absolute truth. So many of us (myself included) focus every second of every day on what is wrong or what we don't have that would make the next second better. Well the truth (as I see it) is that when you get that "thing" your life is not better, because you have programmed your mind to always be searching. Each of us search for something different but the result is the same - feeling unfulfilled, unloved and empty. I have a huge hole in my soul and I know that the only way to recover from the loss of my dear boy is to finally and wholly love myself.
It always boggles my mind to hear so many people talk about me with such admiration. I truly feel that I have done only what any parent would do and that is love my children and do the best possible for that day. That does not seem extraordinary to me. I am starting to listen more and learn from you all though. So many of you can't be wrong, huh? So, with baby steps, I am going to try to feel Alex's unconditional love for myself. Wouldn't that be a grand way to go through our days; if we loved ourselves unconditionally and therefore knew that the rest of the world was hurting just as we hurt and love and kindness were the answer to the crisis at hand? Wow! what a concept!!!
Okay, so Christmas is coming and I realized yesterday that no where in our media, advertisements, or daily lives do we talk much about the true meaning of Christmas. It is no longer "correct" to do so. I feel our children only know it as a day that they get gifts and that is it. I'm not saying that everyone should go to church, not by any means. But shouldn't we talk about giving and love and the reason for Christmas? Shouldn't we teach our children about the origins of this holiday? I realize this would be different for every family and I also think it would be grand if we all understood Kwanzaa and Hanukkah too. Perhaps learning how this holiday is celebrated all over the world would be a better idea than just emptying our pocketbooks, creating more debt and filling our homes with stuff. Okay, I'm done. Please forgive my soapbox rantings!!
I remember our second Christmas with Alex in 2003. Alex was one and Steve and I had had a very difficult year financially. We only had money to buy Alex one gift. I thought long and hard about what I wanted to get him. Since he loved music so much, I decided to buy him a kid size piano. Tuesday Morning advertised one and on the day the store opened, I got up at the crack of dawn, poured some coffee and drove to the store. I wish I could share the feeling of joy and happiness I felt that morning. I was so excited as I stood outside the doors waiting for them to open. As I drove home I thanked God for helping understand that I was blessed to have such a beautiful family and that the love we shared was much more important than the giving of gifts. I still think of that Christmas as my favorite.
This year's Christmas is not something I am looking forward too though. We will be with family and I am trying to focus more on that than Alex's absence. I'm pretty sure though that I will be overcome by sadness and grief. The question is how long will it last and will I be able to pull myself out of it? I'm sure I will. Zoe Grace absolutely demands my attention and she constantly reminds me of what I have still to live for.
Well, this is too hard but with your love and prayers we'll make it through.
God bless!
G
Last week on the ABC Nightly News program, Joe Biden was being interviewed. He lost his wife and daughter in a car accident early in his life. His 2 boys survived and he talked about loss. To paraphrase his words he said "suicide is a rational option, if the love you shared was as great and profound as you believe then why would you want to re-establish your life?" (to hear the interview in its entirety go to www.abcnews.com and search "joe biden"). I have to say that living without Alex is too hard at times but I don't want to check out. I just want Alex with us again and always. I miss his smile and his laugh and his big brain! I want to hold him and stare into those beautiful eyes; watch him sleep and play a game with him. My heart has never known unconditional love before Alex and Zoe. Alex was the first to show me how grand love really can be. I knew when I met him that my life would never be the same again.
Mr. Biden also talks about feeling guilty when you realize that you want to live. He talks about his father telling him "get up, get up". His father told him that success is not measured on how many times you are knocked down but how quickly you get up. He also says you have to focus on what you have. I know this is an absolute truth. So many of us (myself included) focus every second of every day on what is wrong or what we don't have that would make the next second better. Well the truth (as I see it) is that when you get that "thing" your life is not better, because you have programmed your mind to always be searching. Each of us search for something different but the result is the same - feeling unfulfilled, unloved and empty. I have a huge hole in my soul and I know that the only way to recover from the loss of my dear boy is to finally and wholly love myself.
It always boggles my mind to hear so many people talk about me with such admiration. I truly feel that I have done only what any parent would do and that is love my children and do the best possible for that day. That does not seem extraordinary to me. I am starting to listen more and learn from you all though. So many of you can't be wrong, huh? So, with baby steps, I am going to try to feel Alex's unconditional love for myself. Wouldn't that be a grand way to go through our days; if we loved ourselves unconditionally and therefore knew that the rest of the world was hurting just as we hurt and love and kindness were the answer to the crisis at hand? Wow! what a concept!!!
Okay, so Christmas is coming and I realized yesterday that no where in our media, advertisements, or daily lives do we talk much about the true meaning of Christmas. It is no longer "correct" to do so. I feel our children only know it as a day that they get gifts and that is it. I'm not saying that everyone should go to church, not by any means. But shouldn't we talk about giving and love and the reason for Christmas? Shouldn't we teach our children about the origins of this holiday? I realize this would be different for every family and I also think it would be grand if we all understood Kwanzaa and Hanukkah too. Perhaps learning how this holiday is celebrated all over the world would be a better idea than just emptying our pocketbooks, creating more debt and filling our homes with stuff. Okay, I'm done. Please forgive my soapbox rantings!!
I remember our second Christmas with Alex in 2003. Alex was one and Steve and I had had a very difficult year financially. We only had money to buy Alex one gift. I thought long and hard about what I wanted to get him. Since he loved music so much, I decided to buy him a kid size piano. Tuesday Morning advertised one and on the day the store opened, I got up at the crack of dawn, poured some coffee and drove to the store. I wish I could share the feeling of joy and happiness I felt that morning. I was so excited as I stood outside the doors waiting for them to open. As I drove home I thanked God for helping understand that I was blessed to have such a beautiful family and that the love we shared was much more important than the giving of gifts. I still think of that Christmas as my favorite.
This year's Christmas is not something I am looking forward too though. We will be with family and I am trying to focus more on that than Alex's absence. I'm pretty sure though that I will be overcome by sadness and grief. The question is how long will it last and will I be able to pull myself out of it? I'm sure I will. Zoe Grace absolutely demands my attention and she constantly reminds me of what I have still to live for.
Well, this is too hard but with your love and prayers we'll make it through.
God bless!
G
Friday, December 14, 2007
Friday, December 14th - The Blur Continues
First I want to thank you all for your prayers and kind words of support and love for Alex and our family. I know it has made a difference in our home. It is absolutely awe inspiring how Alex has affected this world in such a positive manner. I am so amazed that our little boy could accomplish so much in such a short period of time. He is such a Super Hero!!!
So, this last week and a half has been a blur. I remember lots of hugs, lots of uncontrollable wailing, physical pain, a beautiful ceremony, flowers and an unexplainable feeling that I have lost something very important and just can't find it. It's like a panic. Where is it? How can I live with out it? What do I do now? Losing Alex's presence in our daily lives has been traumatic. I walk around the house doing stuff until the grief grips me and all I can do is hold down the couch. I have watched many movies the past few days and don't remember much about them. One I do remember was "Catch and Release". It was filmed in Boulder, CO and to honor her dead fiance, the main character creates a "peace garden". I thought that we should create a "hope garden" for Alex at the Children's Hospital. Wouldn't that be grand? Something really inspirational and fun for kids. I also watched "Edward Scissorhands" and it just occurred to me that we could have those fun-shaped hedges and trees like in that movie. Children should have a place to go and learn that there is always hope. (Is there always hope?)
You can't imagine how much physical pain I was in last week and the first part of this week. The physical manifestation of my grief and loss was acute and engulfing. A dear friend bought me a hot stone massage that worked wonders for me and I know has expedited my recovery. If you have never had a hot stone treatment, GO GET ONE!!! Coldwater Creek Spa is where I recommend you go too! If you can't do that then get an "essential pedicure" and just relax!
At Alex's service many incredible words were spoken. I remember our neighbor, Kevin, saying that Alex accomplished something every person in the world strives to do and that is to impact the lives of every person they meet. I thought that was a profound statement and very true. Of course, Alex has changed the lives of people he has never met too. That is the wonder of his truth, spirit and love for life.
Alex was cremated on Wednesday. It was my birthday and a very hard day for me. The dogs had gone on a rampage the night before and I found two of the gifts Alex chose for Xmas gifts for his family. Alex absolutely loved flashlights so he got his dad this really cool lantern. He also loved baths and so he got ZG some bath tub letters and numbers. Knowing that he picked out these gifts and also knowing that they reflected his love for his family brought me to my knees. I still can barely contemplate Christmas without Alex. Each day I feel his absence. I also feel his joyful spirit at times too.
Okay, that about does it for me. Steve seems to be handling things okay. Unfortunately, his good friend moved away this week and I worry about him sinking. Zoe Grace asks "where's Alex? Alex in Oklahoma? Mom, I lost Alex?" about once or twice a day. She really misses him and we just keep telling him "no Zoe, Alex is dead." That is what all the books say to say. They don't say where the well of strength is to say it though!!
God bless!
G
So, this last week and a half has been a blur. I remember lots of hugs, lots of uncontrollable wailing, physical pain, a beautiful ceremony, flowers and an unexplainable feeling that I have lost something very important and just can't find it. It's like a panic. Where is it? How can I live with out it? What do I do now? Losing Alex's presence in our daily lives has been traumatic. I walk around the house doing stuff until the grief grips me and all I can do is hold down the couch. I have watched many movies the past few days and don't remember much about them. One I do remember was "Catch and Release". It was filmed in Boulder, CO and to honor her dead fiance, the main character creates a "peace garden". I thought that we should create a "hope garden" for Alex at the Children's Hospital. Wouldn't that be grand? Something really inspirational and fun for kids. I also watched "Edward Scissorhands" and it just occurred to me that we could have those fun-shaped hedges and trees like in that movie. Children should have a place to go and learn that there is always hope. (Is there always hope?)
You can't imagine how much physical pain I was in last week and the first part of this week. The physical manifestation of my grief and loss was acute and engulfing. A dear friend bought me a hot stone massage that worked wonders for me and I know has expedited my recovery. If you have never had a hot stone treatment, GO GET ONE!!! Coldwater Creek Spa is where I recommend you go too! If you can't do that then get an "essential pedicure" and just relax!
At Alex's service many incredible words were spoken. I remember our neighbor, Kevin, saying that Alex accomplished something every person in the world strives to do and that is to impact the lives of every person they meet. I thought that was a profound statement and very true. Of course, Alex has changed the lives of people he has never met too. That is the wonder of his truth, spirit and love for life.
Alex was cremated on Wednesday. It was my birthday and a very hard day for me. The dogs had gone on a rampage the night before and I found two of the gifts Alex chose for Xmas gifts for his family. Alex absolutely loved flashlights so he got his dad this really cool lantern. He also loved baths and so he got ZG some bath tub letters and numbers. Knowing that he picked out these gifts and also knowing that they reflected his love for his family brought me to my knees. I still can barely contemplate Christmas without Alex. Each day I feel his absence. I also feel his joyful spirit at times too.
Okay, that about does it for me. Steve seems to be handling things okay. Unfortunately, his good friend moved away this week and I worry about him sinking. Zoe Grace asks "where's Alex? Alex in Oklahoma? Mom, I lost Alex?" about once or twice a day. She really misses him and we just keep telling him "no Zoe, Alex is dead." That is what all the books say to say. They don't say where the well of strength is to say it though!!
God bless!
G
Wednesday, December 05, 2007
Wednesday, December 5th - Pain, Agony and Info
Alex passed very peacefully in his father's arms. He awoke yesterday morning with a very painful headache and swollen forehead and right eye. Tylenol did not help and since Alex was crying due to the pain, we started the Dilodid IV. Due to many factors, it took hours to get Alex relief but he was free of pain eventually. His last word was "music". He wanted to change the tv channel from his shows to the "massage music" on comcast (soundscapes).
Alex passed at 11:45am. After that we took him to the master bedroom, bathed him and oiled his body with massage oil. We changed his clothes and put on his Spider Man pajamas. Then I broke down completely and utterly. Then I stayed with him kissing and holding and just looking at his beautiful face. The swelling was gone and he looked so lovely and at peace.
By 3pm the morticians were here to take him away. Steve carried him out the back door. The sky had this eerie yellow tint to it and for the first time all day, Alex looked dead. I think the hardest thing I have ever done is to watch him leave our home for the final time. I broke down again in the back yard screaming at the top of my lungs.
Steve and I were able to compose ourselves enough to talk to Zoe. She went in and said "good bye" to Alex then went to watch Diego. She seemed very sad and mad yesterday and would not sleep until I came in and laid down with her. I woke up at 4:30am in terrible pain. My entire body hurt. I felt as though I had been in a horrible car accident. I got up and took some med they gave me in the ER for pain. Next thing I know it was 7:30am and I needed to get up and get ZG ready for school. I have no idea how I got out of bed but I did and when Nadine came by to pick up Zoe, I was laying on my back in the playroom with Zoe laying on top of me. As soon as she was out the door, I went to lay down in our bed. All morning I felt as though my limbs were made of lead and the pain was excruciating. Finally, I was able to get up and take a divine bath downstairs. All the ladies did an incredible job at making me comfortable. A
Since then I have been to the funeral chapel and made arrangements for services. The fact that I just had to pick out my child's casket is mind numbing. I feel like a zombie as I write this now. I asked Steve this morning if I was still Alex's mother. Since Alex is no longer here to nurture, nourish and hold then how do I call myself his mother?
Here are the details of the services for Alexander Michael Kasnoff:
Friday, December 7th Viewing/Visitation from 5:30 pm to 8 pm at Moore Howard Funeral Chapel; 4345 West 46th Avenue, Denver, CO 80212; 303.433.6425; john.demers@sci-us.com.
Alex's memorial service will be held on Saturday, December 8th at the same location at 10am.
God bless you all. Hold on tight to one another and make sure everyone you love knows how you feel today.
G
Alex passed at 11:45am. After that we took him to the master bedroom, bathed him and oiled his body with massage oil. We changed his clothes and put on his Spider Man pajamas. Then I broke down completely and utterly. Then I stayed with him kissing and holding and just looking at his beautiful face. The swelling was gone and he looked so lovely and at peace.
By 3pm the morticians were here to take him away. Steve carried him out the back door. The sky had this eerie yellow tint to it and for the first time all day, Alex looked dead. I think the hardest thing I have ever done is to watch him leave our home for the final time. I broke down again in the back yard screaming at the top of my lungs.
Steve and I were able to compose ourselves enough to talk to Zoe. She went in and said "good bye" to Alex then went to watch Diego. She seemed very sad and mad yesterday and would not sleep until I came in and laid down with her. I woke up at 4:30am in terrible pain. My entire body hurt. I felt as though I had been in a horrible car accident. I got up and took some med they gave me in the ER for pain. Next thing I know it was 7:30am and I needed to get up and get ZG ready for school. I have no idea how I got out of bed but I did and when Nadine came by to pick up Zoe, I was laying on my back in the playroom with Zoe laying on top of me. As soon as she was out the door, I went to lay down in our bed. All morning I felt as though my limbs were made of lead and the pain was excruciating. Finally, I was able to get up and take a divine bath downstairs. All the ladies did an incredible job at making me comfortable. A
Since then I have been to the funeral chapel and made arrangements for services. The fact that I just had to pick out my child's casket is mind numbing. I feel like a zombie as I write this now. I asked Steve this morning if I was still Alex's mother. Since Alex is no longer here to nurture, nourish and hold then how do I call myself his mother?
Here are the details of the services for Alexander Michael Kasnoff:
Friday, December 7th Viewing/Visitation from 5:30 pm to 8 pm at Moore Howard Funeral Chapel; 4345 West 46th Avenue, Denver, CO 80212; 303.433.6425; john.demers@sci-us.com.
Alex's memorial service will be held on Saturday, December 8th at the same location at 10am.
God bless you all. Hold on tight to one another and make sure everyone you love knows how you feel today.
G
Wed Dec 5 - Information
We'll have more details after 4:00 today so until then: visitation will be on Friday and the memorial service will be on Saturday at the Olinger Moore Howard Chapel, 4345 W. 46th Ave.
The family asks that memorial donations be sent to:
Neuro Oncology Research Fund
Children's Hospital
13123 E 16th Ave
Aurora, CO 80045
Attn: Amy Wilson - Box 115
This is Dr. Foreman's facility and your support will help Alexander's friends. Thank you!
The family asks that memorial donations be sent to:
Neuro Oncology Research Fund
Children's Hospital
13123 E 16th Ave
Aurora, CO 80045
Attn: Amy Wilson - Box 115
This is Dr. Foreman's facility and your support will help Alexander's friends. Thank you!
Tuesday, December 04, 2007
Tuesday, December 4th - Amazing Kid
Thank you all for your comments. I just got a chance to read them this AM. I did not leave Alex's side much at all yesterday and he is resting now. Alex is absolutely AMAZING!!! He fought so hard yesterday. He was blue at 10:30 AM and fought back from that. Then his blood pressure dropped into the low 40's and we all started saying our good byes. I called my sister and when her husband, who can magically make coins appear from Alex's ears, said "watch those ears"; Alex's eyes opened and a huge smile came over his face. He then woeke up and played Spider Man Wii with his dad!
We are able to keep him comfortable with the robinul (dries up the fluid in lungs) and the Midazolam (anti-nausea, anti-seizure, and anti-anxiety med). When the Robinul stops being able to help him with the fluid in his lungs and he starts gasping for air (most likely scenario) then we have some Dilodid (morpheine derivative) to give him so that he won't feel like he is suffocating.
So the hospice nurse says this up and down can go on for days. I'm sure I can take it but I don't want to. I hope you understand what I mean by that. I will have to find inner resources that are currently unknown to me to survive more days like yesterday.
Both my sister and sister-in-law arrived last night. We are so grateful to have them here! I plan on using some of their resources as well! To top all of this off, our dog (puppy) Roxie is very ill. She has been quite mopey since Sunday night and we all thought it was just a dog's way of mourning. But she woke Steve up crying and whining last night. She has a vet appointment at 10:30am. I hope this is an easy fix (and cheap one too). We love Roxie so much. She has to be one of the sweetest dogs I know.
Okay, ZG needs to get to school. Love and hugs. Keep those prayers coming!!!
G
We are able to keep him comfortable with the robinul (dries up the fluid in lungs) and the Midazolam (anti-nausea, anti-seizure, and anti-anxiety med). When the Robinul stops being able to help him with the fluid in his lungs and he starts gasping for air (most likely scenario) then we have some Dilodid (morpheine derivative) to give him so that he won't feel like he is suffocating.
So the hospice nurse says this up and down can go on for days. I'm sure I can take it but I don't want to. I hope you understand what I mean by that. I will have to find inner resources that are currently unknown to me to survive more days like yesterday.
Both my sister and sister-in-law arrived last night. We are so grateful to have them here! I plan on using some of their resources as well! To top all of this off, our dog (puppy) Roxie is very ill. She has been quite mopey since Sunday night and we all thought it was just a dog's way of mourning. But she woke Steve up crying and whining last night. She has a vet appointment at 10:30am. I hope this is an easy fix (and cheap one too). We love Roxie so much. She has to be one of the sweetest dogs I know.
Okay, ZG needs to get to school. Love and hugs. Keep those prayers coming!!!
G
Monday, December 03, 2007
Monday, December 3rd - Prayers Please
Good morning. Alex is not doing well. Last night he became very frustrated because he could not drink or eat. He even asked that we do his "thrush swab" so he could eat his dinner. He hates his thrush medicine! Last night he also needed lots of suctioning. It sounds like his lungs are full of fluid. My worst fear may be coming true. That Alex is suffocating! If he has to go, please Dear Lord, don't let him suffer!!! This morning he is on O2, on the couch and resting. His eyes have not opened in the past hour and he no longer has control over his head, legs and his left grip is very weak. It is very difficult to understand him because it sounds like fluid is stuck in his throat. It just comes out very weak and girgly.
Please forgive me for not calling you if you are on our call list. THis is the most time I care to be away from Alex.
Alex had an absolutely wonderful time at the Make a wish Holiday store! With a great deal of effort, my old boss delivered his Power chair to the hospital and Alex was off!!! He loved going fast and doing spins in his chair. Everyone noticed the beautiful smile on the beautiful boy in the fast chair! It was a spectacular time!! Thank you Jerry!!!! You made this possible!!
Please pray for Alex.
God bless!
G
Please forgive me for not calling you if you are on our call list. THis is the most time I care to be away from Alex.
Alex had an absolutely wonderful time at the Make a wish Holiday store! With a great deal of effort, my old boss delivered his Power chair to the hospital and Alex was off!!! He loved going fast and doing spins in his chair. Everyone noticed the beautiful smile on the beautiful boy in the fast chair! It was a spectacular time!! Thank you Jerry!!!! You made this possible!!
Please pray for Alex.
God bless!
G
Thursday, November 29, 2007
Thursday, November 29th - Update
So we have not had any alarms during the night lately. Alex does seem to need the O2 when he is awake more than ever though. But that is okay! Yesterday Steve came to Alex's OT/PT appointment with us. Alex had a good time kicking blocks and bugs onto his Dad. We took some great video. Alex also has a yeast infection in his penis and thrush in his mouth. We started treatments yesterday and hope that his swallow will be better when the thrush is gone.
Yesterday was also spent in a pretty lousy mood. Steve and I could not stop arguing with each other. I finally left to have a beer and burger with a good friend that was over for a visit. Steve really warmed up when we returned with a burger for him too. Then we watched "How the Grinch Stole Christmas" and then bedtime.
Okay, tomorrow we hope to take Alex to the Make-A-Wish Holiday store at TCH. I hope that we can get him there and his new power chair. I know he would prefer to be able to move around by himself as he does his Christmas shopping. Wish us luck!
So the 72 hour notice has been joyfully dismissed! Alex's stats are good as are his spirits. My issue with him now is that he wakes up everyday asking for some new video, game and/or gift. I so want him to be grateful for the multitude of toys he has as well as the friends and family that surround him with love. This is such a struggle for me. I get so frustrated with him and then at myself for being short with Alex. Somehow (Nonni, friends, dad) he ends up getting what he has asked for that day. So my efforts are to no avail and it starts all over the next day. I know I need to let this go, but our wallet would appreciate the break!
I wanted to write about Zoe Grace for a bit. She is such a joyful child (except when her nap is cut short). She starts the day with "Hi Mommy, I'm awake now!" that just makes the morning bright when accompanied by her smile! She is actively potty training and is quite successful for everyone else but me (what's up with that?)! I'll take progress anyway I can get it here though! She loves playing games with Alex on the Wii (even if she uses the wrong controller). And the Teenage Mutant Ninja Turtles are still her favorite heroes. If Alex's alarms go off, she always asks "is Alex okay?" over and over until things stabilize. She is very empathetic and loving toward Alex. She is also a great two-year old, testing her boundaries and such. She keeps us busy!
Okay, I have a list of chores to do today. I really want to go get our Xmas tree today! We have friends that want to bring Santa to the house. I think this year's tree will have lots of Spider Man ornaments on it!!!
Love and many thanks for the powerful prayers. Keep it up!
G
Yesterday was also spent in a pretty lousy mood. Steve and I could not stop arguing with each other. I finally left to have a beer and burger with a good friend that was over for a visit. Steve really warmed up when we returned with a burger for him too. Then we watched "How the Grinch Stole Christmas" and then bedtime.
Okay, tomorrow we hope to take Alex to the Make-A-Wish Holiday store at TCH. I hope that we can get him there and his new power chair. I know he would prefer to be able to move around by himself as he does his Christmas shopping. Wish us luck!
So the 72 hour notice has been joyfully dismissed! Alex's stats are good as are his spirits. My issue with him now is that he wakes up everyday asking for some new video, game and/or gift. I so want him to be grateful for the multitude of toys he has as well as the friends and family that surround him with love. This is such a struggle for me. I get so frustrated with him and then at myself for being short with Alex. Somehow (Nonni, friends, dad) he ends up getting what he has asked for that day. So my efforts are to no avail and it starts all over the next day. I know I need to let this go, but our wallet would appreciate the break!
I wanted to write about Zoe Grace for a bit. She is such a joyful child (except when her nap is cut short). She starts the day with "Hi Mommy, I'm awake now!" that just makes the morning bright when accompanied by her smile! She is actively potty training and is quite successful for everyone else but me (what's up with that?)! I'll take progress anyway I can get it here though! She loves playing games with Alex on the Wii (even if she uses the wrong controller). And the Teenage Mutant Ninja Turtles are still her favorite heroes. If Alex's alarms go off, she always asks "is Alex okay?" over and over until things stabilize. She is very empathetic and loving toward Alex. She is also a great two-year old, testing her boundaries and such. She keeps us busy!
Okay, I have a list of chores to do today. I really want to go get our Xmas tree today! We have friends that want to bring Santa to the house. I think this year's tree will have lots of Spider Man ornaments on it!!!
Love and many thanks for the powerful prayers. Keep it up!
G
Tuesday, November 27, 2007
Tuesday, November 27th - Update
Good Morning! What a beautiful, sun-filled day! Alex had his second "no-alarm" night last night. He is currently battling his cousin on the Wii Spider Man game.
I do have a request to make. Since Alex (and I) get so overwhelmed with a full house, please call before you stop by for a visit. This way we can make sure everyone has quality time with Alex.
God bless! love and hugs!
G
I do have a request to make. Since Alex (and I) get so overwhelmed with a full house, please call before you stop by for a visit. This way we can make sure everyone has quality time with Alex.
God bless! love and hugs!
G
Monday, November 26, 2007
Monday, November 26th - Update
We went through the night without any alarms on Alex's pulse ox. This means his readings did not go below 80% all night. We think that is probably due to the fact that his Midazolan was increased about an hour before bed time. This morning he seemed pretty out of it and we are sure we have seen a few petit mal seizures (space out-like) today. His pulse ox dropped into the 70's and he was very out of it at 3pm. They say these small seizures will lead up to a big one.His hospice nurse said his blood pressure was pretty good and his lungs sounded okay, but he is definitely slowing down. She would not commit to the 72 hours instead she said "no one knows." Steve and I had to discuss what we would do in the case of coma, etc.
So there we are. Someone let me off this roller coaster. Alex seems very happy since his friend Eduardo came by and gave him a talking Spider Man and since he saw the twin's family.
My sister plans to leave tomorrow morning with her husband and son.
God bless you all for your support and beautiful messages.
Gotta go!
G
So there we are. Someone let me off this roller coaster. Alex seems very happy since his friend Eduardo came by and gave him a talking Spider Man and since he saw the twin's family.
My sister plans to leave tomorrow morning with her husband and son.
God bless you all for your support and beautiful messages.
Gotta go!
G
Sunday, November 25, 2007
Sunday, November 25th - 72 Hour Notice
So Alex had a "seizure" last night that lasted about 20 or 30 minutes. During this time, despite being on his oxygen, his pulse ox dropped to the high 50's and it was with great difficulty that he was able to get it to a reasonable concentration. Steve and I were completely scared but calm at the same time. I have never been so happy to see the sun shine on Alex's face as I was this morning!
Today, Alex's pulse ox has been around the 80's without the o2 on and reasonable with it. His mood is fine, but he is definitely slower. His smile still lights up our world!
Steve started off the day contacting dear friends and family and giving them 72 hour notice. I asked the hospice nurse if she thought this was a reasonable time frame (forgive my matter-of-factness here) and she agreed with Steve's estimate.
Due to last night's seizure, my sister and her family decided to stay at least for one more day. Our house was full of friends and family this evening but I could not get out of my grumpy mood. Then Steve took over the grump role and my sister and I put the kids to bed.
If you care to communicate with us and don't talk to us on a weekly basis (and maybe if you do), we prefer that you post a comment on this blog. Otherwise, please allow us the time to be with Alex. I will do my best to keep the blog updated.
Your prayers are most welcome!
God bless!
G
Today, Alex's pulse ox has been around the 80's without the o2 on and reasonable with it. His mood is fine, but he is definitely slower. His smile still lights up our world!
Steve started off the day contacting dear friends and family and giving them 72 hour notice. I asked the hospice nurse if she thought this was a reasonable time frame (forgive my matter-of-factness here) and she agreed with Steve's estimate.
Due to last night's seizure, my sister and her family decided to stay at least for one more day. Our house was full of friends and family this evening but I could not get out of my grumpy mood. Then Steve took over the grump role and my sister and I put the kids to bed.
If you care to communicate with us and don't talk to us on a weekly basis (and maybe if you do), we prefer that you post a comment on this blog. Otherwise, please allow us the time to be with Alex. I will do my best to keep the blog updated.
Your prayers are most welcome!
God bless!
G
Friday, November 23, 2007
Friday, November 23rd - 24 hour watch
While we were painting pottery today, Alex was holding my hand as I squeezed the writing paint so he could spell out his name on his vase. Very soon after we started the "A" Alex's hand just started going up and down, up and dooooooown, slower and slower. When I glanced at him, his eyes were glazed over and then his head jerked and you could tell he had "spaced out" for a while. Within 10 minutes he had a raging headache and we had to pack up and head home. ON the way, I figured out that Alex had had a seizure. When the hospice nurse arrived she confirmed my fears. Alex must now be under observation 24/7. We have to be aware and available to react if anything else should happen.
Alex is awake and eating like a mad man right now. It seems that the 40% increase in his Midazolam has helped his appetite. I'm completely freaked out now and so very grateful that my sister and her family are here. We all plan to take shifts this evening.
Okay, more later! Think positive, longevity-inspiring thoughts!
Love, G
Alex is awake and eating like a mad man right now. It seems that the 40% increase in his Midazolam has helped his appetite. I'm completely freaked out now and so very grateful that my sister and her family are here. We all plan to take shifts this evening.
Okay, more later! Think positive, longevity-inspiring thoughts!
Love, G
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